Tag: chronic illness

So I’m at a crossroads in my life. Or perhaps, more accurately, a dead end. I’ve never had a great life plan or ambition or expectation but I think working full time was just always a given.

warning: this is unedited, apologies for errors

About a year ago it started to dawn on me that I wasn’t up to full time work. By September-ish I had managed to externalise that, with lots of tears. By March it was reality. I had gone from 37 hours a week to 30. Which might not seem a lot but dropping from five days a week to four days a week was terrifying, heartbreaking and agonising. I’ve known for quite some time that my dregs of self-esteem are very much tied up with work and being productive. And saying I can’t manage that stirred up some major issues for me. I was essentially saying that I was worthless because I couldn’t work full time. I was angry that my body had taken more things from me. I was scared and it was a vulnerable place for me. The way I saw it, I was having to put my hand up and say I can’t do this, I am failing at full time work. What would people think of me? More importantly, what did I think of me. Hint: on the whole they were very different responses.

So it’s been almost a year since I told someone I needed to work less. And a lot has happened in that time – I have started getting care, started using crutches, started using wheelchairs and my pain has increased considerably in the last year.

Which brings me to the present day. I have taken more time off work because of pain in the last two months than all my sick leave from the rest of my career combined. And the sinking realisation that I can’t work four days a week hit. It hit with tears and frustration and anger and ranting texts sent to a very patient and supportive friend. A week after I had this realisation, my manager asked how I was getting on with the reduced hours and were they helping enough? No. There’s no sugar coating it, the answer is no, I can’t work 30 hours a week.

And that’s why it’s less of a crossroads and more of a dead end – I can’t keep moving forward. Something needs to change. I don’t yet know what my hours will look like other than less.

And I haven’t yet figured out what those non work hours will look like. When I first reduced my hours it was simple, I would work Monday and Tuesday, rest all day Wednesday, work Thursday and Friday and rest over the weekend. That just about felt justifiable to me. But I can’t comprehend the idea of taking more time off work and resting. I think there is a need to do that to some extent because otherwise I still won’t be fit for work on the days I do go. But, and this comes back to having self-worth tied up with productivity, I feel I need to be doing something.

And financially, I do. Reducing my hours the first time was a huge hit to my bank account. I’ve been supplementing earnings with savings and thankfully was approved for PIP just before my hours reduced so that has helped a bit. But reducing my hours further will put me in a very vulnerable financial situation. Yes there are other benefits which at some point I may be eligible for but (again, self-worth is raising its head) I don’t feel I deserve them (which is nonsense) and I find the idea of being reliant on the government quite scary and it feels like a vulnerable situation. For so long, I’ve been financially independent and before that I was striving to be.

Anyway, to sum up the situation is more ‘free’ time and less money. So surely I can find a way to make money which isn’t going to have a negative impact on my health?

So far all I’ve come up with is photography (with the help of a couple of friends). But that is a scary huge thing to do. So many what ifs and as far as I can see no certainties. Or writing, which has the same risks. The biggest fear is that I will be laughed at – people will look at my work and think why am I trying to sell it, it’s not up to standard, what right do I have to charge people for my work?

If it hadn’t been for my pain, I’d never be thinking about the possibility of taking a risk with the more creative side of me. So maybe that’s the happy ending to this post.

Yes pain sucks, but maybe, just maybe, it means you do things you wouldn’t otherwise do.

As you may already know, I have a chronic pain condition called Ehlers Danlos Syndrome. My hands are the most affected part of my body and this makes everyday things like cooking very difficult. As they were worsening, I found that there were fewer and fewer things I could manage to cook. So I did what I always do, I looked online for advice. But there didn’t seem to be much… there was a lot about using food to make yourself well again but not much on food that you can prepare when you have chronic pain. So instead I put together my own advice and recipes.

It’s based entirely on me, my likes and dislikes, my pain and my situation so it won’t be entirely spot on for other people.

Unfortunately, since having the idea of the chronic pain cookbook, my pain has deteriorated too much and I now need carers to cook for me but I hope it is of help to someone.

Art journaling really helps my mental health but I’ve had to really adapt my art journaling techniques and expectations as my hands are in a lot of pain and i struggle with fine motor skills. It’s been, and continues to be, a journey of trial and error, discovery and adaptations. Because of those limitations, my journaling has become more precious, more thoughtful and a slower process (in a good way). I have ended up adding a lot of depth to my pages because I can only do a little bit of a page at a time and this also provides space for reflection between layers. I definitely feel that some of my better pages have arisen because of my limitations. In fact my latest journal charts my journey from “argh I can’t hold a pen” to “oh wait, if I do this very slowly, with lots of breaks, using layers and the right techniques I can still do this”. It’s been, and continues to be, a lot of trial and error. What I can do one day is not the same as another day.

Pre 2015

I think learning to work with my limitations, not against them, has made art journaling a worthwhile experience for me in itself although it is so much more than that. I do feel if I can do it then so can almost everyone, no excuses!

2015

Technique wise, I do a bit of collaging, use photos I’ve taken, splash paint around, use found objects, stencils, inks etc. I can’t hold most pens anymore so words come from print outs, magazines, stickers etc. Again, working within that limitation makes it easier in some ways – having the world as your oyster, or the alphabet as your seahorse (or whatever is appropriate there) can be overwhelming to the point of freezing you. I try to journal something that comes out of the day which means I’m more tuned in to what’s going on round me. For example when I am out I might be looking for found objects such as feathers or if a particular quote resonates, I’ll pay more attention and make a note of it. It’s paying attention in a deeper way – if I wasn’t journaling, I’d miss the feather, I’d hear the quote and think yeah that sounds great but then it’d slip away from me.

What I can do varies from day to day. Some days I just place cues; feathers, petals, a word ripped of a leaflet. These hold the place for me so i can return at another time when I am able to take the cue and roll with it. It might be a few days, it might be a few weeks but those cues fester in the back of my mind until I have time, have spoons or have a feeling about what the first or next step is. I say feeling, I don’t generally have an image of what I’m wanting, it is much more something I feel my way through. I will look through my stash and see what speaks to me. I will move things around on the page. Or just get stuck in adding colour and seeing what happens.

Tools I have found I can use

Ink and ink pads (but not stamps, I can’t seem to use them without lots of pain so I use ink pads with stencils instead)

Stencils

Acrylics

Chalk or soft pastels – these are so gentle and a great way of getting a bit of colour for not much effort

Chunky handled brushes

Glue tape – I find this easier than a glue stick because it requires less pressure and it sticks much better. I find it better than pva because that involves holding a paint brush.

Paper – a variety of colours, craft paper, wall paper, wrapping paper, junk mail, any kind of paper will do! If you like paper, check out flow magazine

Photos

Other bits and pieces – tiny bits of ribbon, buttons, fabric, words ripped out of things…

Anyway, I’ll stop there because I could talk, or write, for hours about it. If anyone has any questions or comments, please add them. I’d love to know what other people are up to, especially other people who have difficulties with their hands as well.

Ok, as promised, I have written some tips for anyone who wants to travel with EDS or a different kind of chronic pain. This is obviously not an exhaustive list and some of may not be helpful to you, please feel free to share your own tips and tricks below.

When I told people I was going to Cambodia, I got a lot of quizzical looks and “how the hell are you going to cope?”s. Some of it is bloody minded stubbornness but a lot of it is planning and preparing. Also, I know that the heat and adrenaline of the holiday will help a bit.

Before

If you’re going on a tour, make sure you let them know about your condition, any concerns, health and safety risks and your limitations. They need to know so they can plan accordingly. They may also require a health check from your GP

Get insurance. Everyone should travel with health insurance but if you have a chronic pain condition it is essential. I use a UK company called Fish who are expensive but they are OK with me being broken. I can also declare all my conditions online without having to ring anyone. I’ve also used Age UK who are very similar to Fish (you don’t need to be a certain age to use them).

Get a super lightweight bag which can be carried in lots of different ways – wheels, rucksac and waist/shoulder strap which you can hack on if needs be using climbing clip things and straps from other bags. My bag is an Osprey one which has wheels and a proper rucksack back complete with waist strap (this makes all the difference to me). It also has a day pack which zips onto the main bag and is all incredibly light weight. It also opens along the length unlike a rucksack where you open at the top so there is less rummaging around in your bag and accidentally dislocating your finger whilst you search for clean underwear. It was expensive but mine was half price in the sales and is well worth the investment.

Make sure you have enough of your medication and pack it in your hand luggage. You might need a drs letter depending on where you’re going and what meds you’re on. Don’t change meds last minute – I did and it added to the stress! Again, depending on the country and your meds, you may need a license to enter. For Cambodia and Thailand, I needed documentation from the Thai and Cambodia government to take in morphine. Allow plenty of time for sorting this out before you go. The appropriate embassy is the best place to start for advice about this.

Pack slowly over a few weeks. Don’t try and cram it all in in one day, slowly put yourself a list together and slowly tick things off as you add them. No point in starting a flare up before you’ve left the house.

On a similar note, plan rest before your holiday. When I went to Cambodia, I set aside the two weekends before for rest and this made a huge difference to my pain and energy levels.

Contact the airline to let them know about any food restrictions and ask for wheelchair support. This is amazing; you will get pushed from check in to plane then onto your next plane or to the taxi rank. It may feel embarrassing or you may be reluctant to ask for help but why waste your precious energy and walking ability to go round an airport, save it for going round the coliseum etc. Also having wheelchair assistance means you don’t have to carry your bag. My shoulders and hands hurt less because I was able to put my bag on my knee (which is heavy because it’s filled with meds). At the airport, once I reached my airline I had help with my bags, I bypassed the queues and they bought the wheelchair to me instead of asking me to walk back to the assistance people.

Similarly you should contact the train station if you haven’t got anyone to help you get on and off the train. Having some visible sign of a disability seems to help as well… This year I was travelling with knee splints and a crutch (my other splints are mostly hidden) and I’ve had far more help. There have been idiots as well but the kindness of strangers has been great. I had people helping me to get my bags on and off the train, offering to put things in the overhead racks. The station staff let my friend through to help when I was struggling with my bag.

During

Take a blanket and a pillow, it will vastly improve your flight. Yes long haul flights provide blankets, but they aren’t warm and they won’t help in the airports. A blanket can be used to make airport seats more comfy, less cold etc.. A blanket also helps hotel beds become a bit more comfortable – lay it under the sheet or use it as a pillow. If you’re travelling between places, use your blanket or bag as a footrest if you’re short, keeping feet and knees supported will help comfort and pain.

Wear comfortable clothing to fly in, including shoes you can slip off easily so when you’re on a cramped plane, you can kick them off and push them under the seat.

Take heatpacks, tubigrip, spare splints, whatever it is that helps a bit, it all adds up. Safety pins are very useful – things happen unexpectedly, splints break, clothes break and safety pins fix.

Take a bear, some things will be tough and you’ll need a hand to get yourself up and going again.

My tablet was really helpful. I loaded it up with tv programmes, audio books, kindle books (as well as taking my actual kindle), I wrote my holiday diary on, took the odd photo on it. If you need emergency info about something most places have WiFi somewhere.

And on that note, take a kindle, do not, I repeat do not, waste precious spoons (not heard of the spoon theory? Check it out) on carrying books around.

Readjust your expectations, you will not be able to go everywhere and do everything in your destination. Pick and choose carefully. One of my favourite days when I went to Bali was slowly walking to the art museum, slowly pottering around the beautiful gardens it was in, then coffee. Followed by lunch in a local cafe with a seat by the street so I could soak up the sense of the place and people watch. Then I headed back to the hotel via the market and had a nap whilst it rained outside. It was a lovely relaxed day and I did what I wanted to do on my schedule and made use of the weather so I didn’t feel like I was missing out. When I met up with the rest of my tour group, they had all got drenched in the downpour leaving them a bit miserable so I definitely got the best out of the day!

You know your pace but I find it helps to go with realistic expectations. I know I can’t join in evening activities and daytime things so I choose day time because that’s more important to me. This does mean I had more room service food and less time with the rest of my tour group but at the end of the day, my limits are different to a lot of peoples and I can’t keep up. I have to choose what’s important to me.

Don’t rush round doing everything as soon as you get there – you will crash. Instead, head to your hotel and relax, sleep, whatever for a while.

The issue of toilets…. The time in Cambodia where I was wearing a long skirt, had my crutch, had awful leg pain and had the toilet was a hole in the ground… Ah that was a challenge! Depending where you go toilets may include squatting toilets or literally a hole in the ground, think about how you can cope.

Postcards – if this is stressful or painful, don’t send them, or only send a few. You could email a photo instead. Don’t feel obliged to ruin your holiday to keep friends and relatives happy.

I wore UV arm covers to put over my splints, bought from eBay. When I’m in the UK I wear cotton or wool arm warmers, partly to hide the splints and partly because the velcro sticks to everything and irritates me.

If massages help. treat yourself, you’re on holiday after all!

After

Plan time to rest after your holiday. If you work, book a few extra days off, you will benefit hugely from it. Again, I book out a couple of rest weekends after I’ve been on a long trip, or, if it’s a short trip, just the one weekend.

If you’ve taken photos blow them up and put them near your bed or sofa so when pain gets you down you can look at them or frame a piece of art you picked up. Make sure there are reminders of the trip.

There is an expectation when writing about pain you will weaving a silver lining a lesson you have learnt a new perspective on the world. And there is a time and a place for that but this is not it. This is a post about loss.

On the surface my condition may seem do have little to do with with loss. but coming to terms with a chronic pain condition has a lot in common with losing a friend or relative close to you. There is a similar grieving process. In this case, it’s yourself you have lost.

I have lost who i was. This is not due to carelessness or lack of adaptation. This is not because i couldn’t mentally adjust my new situation. This is because where i am now many things that would have defined me are now impossible. So what have i lost? Other than myself of course.

I have lost my freedom, my independence, any spontaneity i may have had, i have lost control. My identity right down to the clothes and shoes i wear has been transformed. I no longer wear rings on every finger instead i wear splints. I look longingly at bracelets I own, my wrists now covered in the medical beige of supportive strapping. In the bottom of my wardrobe, still in the box they came in, lay my beautiful black boots, ankle high, lace up with ribbon, 4 inch heels – beautiful. They took all of my savings when i was 18 and i will never be able to wear them again. Yet despite having known this for many years i am unable to part with them. i cannot deal with this loss. There are too many losses, i cannot inflict another upon myself. Under a table in my living room lay a pair of gorgeous brown knee high DM’s, once again lace up with ribbons. Even these with a sensible heel and ankle supporting structure are beyond me now. They are replaced by a functional pair of boots – zip up because my fingers can’t cope with laces.

I have lost more than books. I have lost plans, dreams, friends, skills, talents, dignity, interests, hobbies. I have lost books. I am surrounded by books I will never be able to read. The pages are agony to turn. The books inflict pain if i hold them.

This is not a happy ending story. I am not your inspiring motivation tale. I have lost so much more than I can bear to think about and this is hard.

So i did a day in the life of anorexia and thought a day in the life of EDS (Ehlers Danlos Syndrome) would help other people understand the impact that it has on my life. This is an average day; it doesn’t take into account bathing, doing things I enjoy, going anywhere other than work etc.

* * *

Midnight till 6.30am I sleep, or attempt to. Sleep is interrupted every couple of hours by the need to go to the toilet and get a drink (yes, I understand the vicious cycle there but I wake up both desperate for a wee and desperate for a drink). I will toss and turn all night. Waking up each time I do as joints scream or poke at me. Lifting the sheets is torture on my fingers. That’s if I’m lucky. My meds lead to frequent insomnia and the worst thing is when I am in too much pain to read either because I can’t ‘turn’ the page on my kindle or the brain fog means the words don’t make sense. If I can read, I can’t do so for more than half an hour before pain takes over (who knew clicking the page turn button on a kindle would be so interruptive). If it’s a bad night, I may dose off about 4am.

6.30-7.30 I have four alarms and a sunrise lamp which sounds like overkill but even then, from time to time, I will sleep through the lot of them.

7.30-7.45 If I have woken up by 7.30, it takes a good 15 minutes to convince myself to get out of bed. It’s a bit scary. Getting out of bed means i find out what damage I’ve done to myself my sleeping. Did I knock my knee slightly out, did my hip end up in the wrong place, did I bend my wrists back on themselves, did I fully dislocate my shoulders? I don’t want to face those answers at 7.45 in the morning! I stumble to the bathroom, go to the toilet and wash my face.

7.50 I get dressed sitting down, the priority is comfort not how clothes look, I avoid buttons and avoid zips. Getting dressed, handling the clothes is agony. I brush my hair which is cut so it’s super easy to maintain. On a bad day I might not bother with a brush. I run dry shampoo through my hair (I wash my hair at most once a week so dry shampoo is essential) and grab the deodorant (pain and exhaustion limits the amount of baths or showers).

8.00 I take the meds which keep me going. At the moment this is a multivitamin, super strong antihistamines, antidepressents, morphine, tramadol and senna (morphine and tramadol = constipation)

8.02 I battle with the Velcro on my splints as I wrestle them on. It hurts. Velcro can defeat my feeble fingers. Quickly put on my boots (DMs to hold my feet and I’ve had to replace my beautiful lace up pair with a pair with a zip because my fingers can’t manage tying them up).

8.05 If I have time, brush my teeth. If not, I’ll swirl mouthwash or skip completely.

8.07 Grab crutch (optional) and leave the flat. Lock the door using a key turner because even stupid little things are no longer possible.

8.10 Meet taxi. Spend £5 getting to work…

8.20 Head towards staff entrance. Hope the disabled door opener works (doors at work are stupidly heavy). Get the lift and slowly make it to my desk.

8.30 There’s a whole story about my work day, we’ll save that for another time

17.00 Taxi home. Another £5 down the drain.

17.20 Battle with the locks to get into the flat and collapse on sofa.

17.30 Remove splits and boots (this hurts) and take more meds

17.35 ‘make’ tea – throw precooked food in the oven and then battle with cutting it up once it’s cooked. Good days see me in the kitchen swearing at my hands as I struggle to cut my food. Bad days result in eating with my fingers. Even worse days, I can no longer use a fork to get food from plate to mouth and I struggle to do it with my fingers.

18.00 Eat in front of a dvd then lay on the sofa until I move to laying in my bed.

19.30 Final meds for the day. Get undressed, more pain. It’s very tempting to sleep in my clothes rather than go through the ordeal of getting undressed then dressed again in the morning… Get into bed, more pain. I might be able to read for a few minutes. By this point turning the page on my kindle is agony.

The Centre for Chronic Diseases and Disorders is exploring poetry and illness. As part of this, they have been running a series of workshops aimed at health care professionals, and people affected by chronic illness. In addition to the workshops there are a couple of events coming up in York in June and an anthology of poems is going to be put together.

I went along to one of the workshops this week, not entirely sure what I was walking into. I really enjoyed the two and a half hour session led by Peter Sansom who has contagious enthusiasm.

The afternoon was generally took the form of a poem being read aloud and then a few minutes for us to write, generally based on a similar structure or prompt from the poem.

The following are some of my unedited scribblings from the afternoon. I do plan on revisiting and revising them.

Prompt: Where am I?

I’m under the duvet hiding from my life
I’m twisted, contorted around a waiting room chair
I’m in every joint of my being, feeling the blurry edges of pain
I’m stuck in my mind, trapped by mental illness, freed by imagination
I’m sunsoaked, by the sea
I’m where I want to be

From a seat, next to her bed
We pass an iPad between us
Her morphine mind grappling
With scrabble words, scrambled words

One room, four patients, one visitor
Loneliness cast over the elderly woman
The nurses say they were unable to reach her children

Clatter of life outside rattles into the ward
Her phone alerts her to a friend’s concern
Ours are the only voices
Disrupting the symphony of A&E.

Later, I hear how the laughter has brightened
Her roommates’ day and how lovely my sister is
She’s always been a charmer
Even from her hospital bed

Prompt: Write to something eg jogging, stammering, piano lessons

A letter to my chronic illness:

Why did you come into
My life and start stealing from
Me? What had I done to
Provoke you? You are
Stripping back my independence.
I’m clinging tightly but it’s
Exhausting when you throw toddler tantrums
How can I hold my
Grip on myself when you scream
At my ankles, at my legs, at my body?
You’ve taken so much and
Given so little. If you were a
Friend, I’d have crossed you
Out of my address book years ago.
You’ve ripped my dreams to pieces
Whilst laughing in my face.
You’re always and forever there.
Please tell me
How can I get a divorce?